CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

New here and to the Mayo forum in general. I was first misdiagnosed in 2020 then properly diagnosed in 2021 CIDP/AMSAN.
Yes first IVIG for about 2 years and now SCIG for a year. With occasional prednisone runs orally after a cold or flu or Covid.
I’m 73 and not retired. I’m a photographer/artist and do dog agility at a championship level. The treatments have given me a life albeit somewhat limited. I have maybe half the energy of a healthy person my age. Do to a bureaucratitic problem I went without treatment for 6 weeks during the switch from IVIG to SCIG so I know how much I gain from it.

Welcome @kgitti, It sounds like you are still able to do what you love which is a plus for a lot of us with chronic conditions. Have you found anything else that helps provide relief or gives you more energy?

I believe autonomic nerve damage impacts body temperature regulation. I have idiopathic small fiber neuropathy confirmed with punch biopsy in 2017. In addition to spinal stenosis and cervical myelopathy (had ACDF surgery), I have started to notice significant CNS/PNS decline. It is like my brain and body are not communicating properly or quickly. Everything seems to be slowing down. I can’t get in to a new neurologist until the end of April for updated EMGs (upper/lower), nerve conduction studies, and brain MRI. My symptoms seem to be pointing to MS. I have seen different rheumatologists and RA/lupus was ruled out. There are times I suddenly get really hot, sweat or very cold. I ask others around me if they are hot or cold and they aren’t experiencing the same temperature discomfort I am. Excessive heat really bothers me. How were you diagnosed with CIPD? Should I ask my neurologist about CIPD? I seem to have pain, numbness, weakness, etc. all over my body. Thanks!

Welcome to Mayo Clinic Connect @jrichardfla ! I’m glad you’ve found this site. With over 100K members, there is a wealth of experience-sharing! Please check out the other discussions

I have the occasional drink now days....down from a ton prior to CIDP since I owned an F&B and was always enjoying drinks with my customers. With CIDP, I find that my tolerance is way down so even two drinks now could put me on the path to falling down easily. So I've cut way back just more for safety reasons. And yes, I do feel better not drinking. But when I did I didn't have any increase in neuropathy just an increase in balance issues. Falling down hurts.

K

@dlydailyhope I was diagnosed over a one year period AT LEAST. I went to five different neurologist during that time and each did their own EMGs, scans, blood work, while two of them did spinal taps. The spinal taps are what honed in on the CIDP something to do with protein levels and the absence or presence of this or that. As you know by know it gets quite complicated down at that level. Anyway, my final diagnosis from a really trusted neurologist is MGUS with CIDP-like symptoms. Well to me, it's just CIDP.

K

By the way, as a note to all as I'm new here....I am an American who has been living in Asia for the better part of 25 years. I am current in China, which is not exactly a hotbed for CIDP study so getting diagnosed and now treated is a bit challenging. I recently stopped work because I just couldn't get there and back easy enough this past year. I have weakness, but I think the over arching issue for me is balance, which I seem to have none. Without touching something while walking or even standing.....I'll go down.

K

I, too, have worsening balance issues and eye pain/blurriness periodically. I am definitely going to talk to my doctor and MS and CIDP. I also have fallen so try to be very careful when I stand up, use stairs, etc. Thank you for suggesting getting the spinal tap in addition to MRIs/nerve studies/scans.

I'm surprised they haven't ordered a lumbar puncture on you yet. I don't think CIDP and some of these other immunological disorders can be properly diagnosed without it. I could be wrong, but it seemed to be the most telling.

Regular PT for three years now-mainly isometrics and stretching that don’t overdue it and set off an exhaustion cycle.
And also I take a
low dose of methylphenidate (Ritalin) which I take daily to boost energy. I rejected using this for along time as I had drug issues in my youth (against my doctors advice) but finally gave in and it has really helped.